Covering the World of Communication Sciences and Disorders

"Hidden Disability" of TBI Goes Public

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Yvonne Hoffman managed to introduce herself before choking up at a June 19 ASHA press conference focused on traumatic brain injury (TBI), saying, "This is so emotional." She described how a "little bump on the head" in January requiring four stitches changed her life.

"I really don’t like this. It’s not much fun, I’ve got to tell you," said Hoffman, a resident of Reston, Virginia.

Hoffman was on a panel of patients and experts who discussed consequences of TBI at the press conference at the National Press Club in Washington, D.C. Although TBI is in the news as a common injury among soldiers returning from Iraq, it is also a leading cause of injury among civilians. According to the Centers for Disease Control and Prevention, approximately 1.4 million TBIs occur annually. But despite this number, limited insurance coverage often consigns TBI survivors to limited treatment—and limited recovery.

ASHA President Noma Anderson noted that soldiers with TBI deserve media attention and the best care available but added, "There is another TBI story—the civilian story."

Zogby International conducted an ASHA-commissioned poll that surveyed speech-language pathologists about civilian TBI. In the poll, 65% of surveyed SLPs reported that inadequate insurance coverage hinders optimal recovery for patients with TBI. In 2000, TBI-related direct medical costs and indirect costs, such as lost productivity, totaled an estimated $60 billion in the United States.

Hoffman recounted being told she might have a concussion and thinking, "Okay, no big deal." After experiencing headaches and memory loss, she received a diagnosis of post-concussive syndrome (e.g., mild TBI). Working with an SLP helped, but her sessions—which focused on daily living—have ended. The accident damaged some of her business skills, which may or may not return. Insurance will not pay for treatment for vocational re-entry. "Controlled panic would be a good way to describe how I feel," she said.

"Post-concussive syndrome is real and it’s serious. There is nothing mild about it," said Kathy Manning, an SLP in private practice from Bozeman, Montana. She noted that 75% to 90% of reported TBIs in the United States are categorized as mild. "It really represents a hidden disability."

"I lost the person I used to be," said Carolyn McCormack, one of Manning’s patients. She was eventually diagnosed with mild to moderate TBI, the result of a rear-end car collision in May 2004. Six months later, after her work productivity slowed and her memory continued to fail, a neurologist referred her to an SLP for cognitive treatment.

The insurance company would not cover the treatment, calling it "investigational." McCormack appealed after learning that the insurance company covered cognitive therapy as an inpatient treatment. Her attorney argued it should also be covered as an outpatient treatment for mild TBI. She won the case.

Part of the problem is the difficulty distinguishing post-concussive syndrome from post-traumatic stress disorder or other mental health issues because of similar symptoms, such as depression, fatigue, pain, and sleep disorders, Manning said.

"Without objective clinical findings, it’s necessary to rely on the patient’s subjective complaints, and these are often dismissed," she said.

"I was fortunate enough to have an understanding SLP who did not ask me for money up front," McCormack said. "It is my hope that more people can be properly diagnosed and treated earlier in their injury."

Jon Weiss of Baltimore also spoke about his TBI. "Every day I work on rebuilding my physical strength and my ability to communicate," he said, speaking slowly and carefully. Weiss was in a coma for three weeks after a car accident in March. He received outpatient physical, occupational, and speech treatment, focusing on community re-entry and group therapy, at National Rehabilitation Hospital. Weiss is now receiving treatment at the Johns Hopkins (Baltimore) outpatient neuro-rehab program, which focuses solely on individual needs and goals.

"It’s really important for the public to understand that while TBI may leave a survivor with disabilities, it is not uncommon for someone to recover and lead a full, productive life," Weiss said, adding, "I plan to do just that."

Clinical Experts Challenge "Investigational" Designation

"There is almost no other condition for which we’d wait until we were 100% positive that everything worked before we tried anything," said Lyn Turkstra, associate professor in the Department of Communicative Disorders at the University of Wisconsin at Madison.

The investigational designation came from a 2002 report to the Blue Cross Blue Shield Technology Center, which based the decision on the lack of randomized, controlled clinical trials of cognitive rehabilitation at that time, she said. Such trials are difficult because TBI patients are a heterogeneous population, while randomized, controlled trials rely on homogeneous populations.

"I think we know that it’s not investigational, based on the data that we have," Turkstra said. She pointed to an upcoming paper from the Academy of Neurologic Communication Disorders and Sciences about the use of external memory aids as compensatory devices. Evidence shows that external aids such as personal digital assistants help people with memory problems, she added.

"We’ve reviewed more than 170 studies of different aspects of cognitive rehabilitation, so it’s not investigational," Turkstra said. "Blue Cross Blue Shield has revised that terminology in the last year, but it’s unfortunate that the statement had such a large impact on reimbursement nationally."